About six months ago, what were once simply painful daily migraines began to morph into a strange, constant stabbing pain in my right eye. After that it wasn’t long before I began to have episodes of slurred speech, very weak limbs, numbness and tingling along the right side of my face and through my arms and legs. I was finding it hard to stay awake, hard to concentrate on projects and hard to find my words. In every appearance it looked as if I’d had a stroke, but my neurologist insisted I had not. I trust him, he is a brilliant doctor. Eventually these symptoms became overwhelming, and I passed out while crossing a road with my family. Two weeks after that I was insensible, asleep off and on for nearly a week. In the midst of all this I had several MRIs, CAT scans and a lumber puncture while in Queens Hospital. They discovered I had either a very small AVM or Cavernoma.
I was released from Queens hospital three weeks ago and told to be on bedrest for two weeks. I was at once relieved I had finally achieved a diagnosis that could possibly be cured; AVM/Cavernomas can be removed surgically, and equally afraid that I had what felt like confirmation of the ticking bomb I’ve long believed to be inside my head. My Father had a brain aneurysm and I believe the tendency to be hereditary. On my Mom’s side of the family stroke is extremely prominent, so going through this at 31 does not instil me with confidence.
To make a tedious story more tedious, my own neurologist does not agree with the Queens assessment that my brain potentially needs a bit of crafty knife work. He is of the opinion that I am experiencing migraine with neuro-deficit, and the small Cavernoma was a coincidental find, but it is not the cause of my symptoms. How do I feel about this to-ing and fro-ing?
Well I can safely say my life has been as nearly ruined as it could be, short of the death of my loved ones. I have lost my health utterly now, I’ve lost my body. I can make myself pretty and wear a nice new necklace but not leave the house. I am writing this now and I’ll probably be worse tonight from the effort. Last week I fell down the stairs and broke and dislocated my middle finger. I don’t recall feeling dizzy at the time of the fall, but it’s telling of my general weakness. When I landed at the bottom and saw my mangled hand I stared at it in shock. All I could think was “Thank god that wasn’t the aneurysm!” I realised that in the split second when I started to fall I believed that in that moment I was dying, and I mourned for my husband and son in the next room about to witness it. That is how I am living now. Yes, I know there are people worse off but right now I’m grieving for what I’ve lost of myself. I’ve been fighting for all of my 20’s to overcome migraines and now I’m bedbound most of the day not from pain but weakness.
Matthew is on week two (or maybe three!) home from work to care for me and Alex so we’re praying to Jupiter and Mars that his career and annual leave will hold out. My drugs are being increased every fortnight in the hopes they will stop the migraines and stop any further stroke-like damage so I can at least play catch up.
Well, as I promised in the title, I am searching for the Phoenix from the ashes. Firstly, I’ve been remarkably happy since I fell down the stairs. The appearance of robo-finger cheered me immensely; it looks like I’m giving the world a gigantic fuck off with my middle finger. For someone who speaks softly it’s perversely thrilling. The sudden realisation that I did not have an aneurysm in that tumble of eternity combined with becoming part-Borg gave me a permanent fit of the giggles. On the back of that I decided we were long overdue for a holiday, but of course not the kind we usually take where we tramp around cities and palaces and coffee houses. That requires far too much stamina for what I’m offering this year, so instead we’ve opted for Menorca. I initially rejected it because I lumped Menorca in with Ibiza without knowing anything of it, and I didn’t want to go anywhere near a club. Matthew insisted I do some homework (shame on me) and I was instantly infatuated not only with the island but with a gem of a hotel. Our lovely Uncle Mike agreed to join us so it will be me relaxing on a beach come July with three lovely men.
The other personal outcome has been my decision to pursue creating a historically authentic, one of a kind dolls house, something I’ve wanted to do my whole life. I’m on a silent campaign to transform the dining room into an entire village but Matthew is insisting we need a table. He thinks I should be happy with just one palace...
Matthew and Alex have been amazingly supportive to me, and I’m trying to be so to them. Alex is a very mature almost 4 year old but he’s still very young to have such a poorly Mama. We’re about as attached to each other as a second skin and it’s been frightening for him to be separated from me during hospital stays. He’s grown up very quickly in some ways, always telling me not to exercise and to let him and Daddy carry things. I spend a lot of time trying to be with him as normally as possible, and I treasure the good days I have when we’ve walked out in the sunshine together.
On the writing side of things little has happened but for the fact that I’ve been invited to set up a profile on the awesome http://www.lazygramophone.com/ and they’ve printed a short story of mine onto postcards! It’s called Naress, check them out.
This shiny little blog piece has taken me an hour to write due to the marvellous robo-finger. It’s not as slimline as Sevon of Nine’s but I flatter myself that it will still have the power to assimilate anyone in my path.